Emily is a mentor for parents caring for a child with chronic lung disease, bronchopulmonary dysplasia (BPD), persistent pulmonary hypertension of the newborn (PPHN), tracheostomy, g-tube, reflux, extreme prematurity, and/or global developmental delay. She also offers mentorship related to gastroenterology, pulmonology, and NICU care services, as well as out-of-state hospital stays.
Oliver was born at just 25 weeks and 5 days gestation. His very early birth and tiny size (1lb. 1oz. and 11 inches) presented so many challenges. Oliver spent 250 days in the hospital before we were able to bring him home. 140 of those days were in the NICU, 60 days in Seattle Children's NICU, and 50 days in the PICU at St. Luke's. When Oliver was finally able to come home it was as a medically complex child. He needed a g-tube for nutrition, a tracheostomy tube for the delivery of support from his home ventilator, oxygen, and monitors. We know the overwhelming feeling of working through our child's needs, therapies, and appointments in order to keep him healthy. He was formally diagnosed with tracheomalacia, bronchopulmonary dysplasia, pulmonary hypertension, extreme prematurity, failure to thrive...the list goes on.
Oliver has been able to come off his ventilator and is now a full-fledged toddler with some extra hardware! Watching him grow, learn, and become this unique spirit has been our joy and privilege.
The life of a medically complex parent is intense, full of twists and turns as well as unexpected happenings. We are here to let you know you aren't alone! Someone who understands wants to hear your story and give you support.
Caring for a child with complex medical needs can be complicated and overwhelming. Support from someone navigating similar challenges can make all the difference.